What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

Huntington’s Disease Society of America Partners with WeHaveAFace.org to Increase Access to The Huntington’s Disease Project: Removing the Mask

New York, NY (February 5, 2016) – The Huntington’s Disease Society of America (HDSA), the world’s largest non-profit organization dedicated to Huntington’s disease (HD) family support and research, has announced that it is partnering with WeHaveAFace.org Inc. to increase access to James Valvano’s independently-produced film The Huntington’s Disease Project: Removing the Mask. HDSA will receive a limited number of Blu-Rays and DVDs of the film to lend to HDSA support groups on a first-come, first-served basis.

Released in 2015 and recognized globally at film festivals, the two-hour documentary is a raw, first-hand account of family experiences with many of the most challenging aspects of Huntington’s disease. Due to the adult themes and sensitive topics of the film, HDSA is requiring that an HD-experienced social worker or mental health professional be present during the screening and to facilitate a post-screening discussion session.

“At HDSA, family is everything, and we are committed to helping families have access to the multitude of resources that can help them navigate the complexities of managing HD,” said Louise Vetter, Chief Executive Officer at HDSA. “Films like The Huntington’s Disease Project: Removing the Mask are important tools in building awareness and understanding of HD, and we are grateful for the opportunity to make this film available in partnership with WeHaveAFace.org Inc.” To request a DVD for an upcoming viewing at your local HDSA support group, please visit: www.hdsa.org/lendinglibrary and complete the online form. An HDSA staff member will reach out within a week to coordinate the date of the screening and confirm the required social worker involvement.

The Blu-Ray/DVDs are free to borrow from HDSA and will be shipped to the facilitator at no cost with a post-paid return envelope. The Blu-Ray/DVDs must be returned to HDSA within ten days of the screening so that they can be made accessible to other HDSA support groups.

As always, HDSA staff are here to assist you. If you have any questions regarding scheduling a screening of the film in your community, please reach out to your HDSA Regional Development team member. For support working including an HD social worker in the screening, feel free to reach out to Anne Leserman, HDSA Assistant Director of Community Services, at aleserman@hdsa.org.

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene that causes HD. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Many describe the symptoms of HD as having, ALS, Parkinson’s and ALS – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with HD and their families. To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800) 345-HDSA.